Tests are physically and emotionally exhausting

I was dog tired when I got home (at 7 pm) from a day of tests yesterday, even though I’d spent much of the afternoon lying down. And I’m still tired today.

The day started with a 2 pm appointment with my medical oncologist’s nurse, who will be my primary contact in the months to come. She told me all about my port and how it works and inserted some little lead or catheter that would be needed later by the PET/CT scan people to inject their dye. Interesting because she missed the port on her first attempt. Hate to think that’s going to happen very often in the future. Apparently the surgeon put the port in a spot where it doesn’t raise much of a bump under the skin. Cosmetically pleasing but trickier for a nurse to access. (From now on, there may be a scab or mark giving her a clue.)

And because she was sitting in on the pathology review Tuesday — the review that was to help decide whether my HER-2 report warranted the TC or AC-T (Adriamycin, Cytoxan, and Taxol) drug regimen, she said the majority opinion was that AC-T should be used (provided yesterday’s echocardiogram doesn’t reveal some dangerous weakness or abnormality, and the conversation didn’t seem to indicate any abnormalities). AC-T is a tougher set of drugs, harder on the heart, and with a different administration schedule than TC. One option, as I recall, is to do AC every two weeks for four to six cycles and then do T every week for four weeks. Or something like that. Bottom line: tougher drugs more often and for a longer total time. (Plus greatly complicating my trying to coordinate appointments with my glaucoma specialist.)

Not happy about this, but I understand. If the HER-2 is so borderline that it’s not a certainty in anyone’s mind, then you play it safe and treat as though it’s positive, just to cover any of those cells that might be present. Or I should say I understand intellectually. Emotionally I’m very nervous about using drugs that could permanently damage my heart. I haven’t heard from the doctor yet, and don’t expect to until Monday, so this is not the final word. It’s just an educated guess by his nurse.

The echocardiogram was uneventful. It was done by a resident or trainee of some kind with a physician standing over her shoulder watching her every move. I don’t know if the pressure she applied with the ultrasound probe was excessive or not, but it did get a bit uncomfortable at times. I reminded her once of the recent surgery in that area. I just lay on a table the whole time. No stress testing on a treadmill or anything. (*Test results came via the internet patient portal this morning saying everything on the echo was “normal.”)

The PET/CT was more time consuming. Using my port they injected some sort of glucose (?) tracer/marker stuff. Then they tucked me into bed with warm blankets to lie still for 45 minutes while the stuff circulated from head to toe. Then into the room with the bed that runs into the long tube. Got comfortable, lying on my back with my arms above my head. She injected something else that was, I think, some sort of contrast to make the concentrations of the tracer show up better. It felt really weird, like someone pouring warm water (water was not my first thought!) over me, starting at the port on my upper right chest. I could feel it spreading across my chest and down toward my feet. Really weird sensation. Then slowly, with periodic stops, she ran me through the tube and back out. Spent maybe 30-40 minutes in the tube. But at least I was comfortable and could breathe easily, unlike the MRI last month.

Then, before leaving, I went by some nurse’s station for removal of the catheter or lead or whatever it was from my port. The only thing that made me yelp was the adhesive on the plastic patch that had covered the port and had been in place all afternoon. I swear it took off some hide. There are still red marks today. I’ll plead for a different covering/adhesive next time, and hope they have some alternatives.

At some point I got a tour of the infusion center and it looked a lot warmer and friendlier than what I saw in Boulder. Comfy loungers for the patients, each facing a window, each with a privacy curtain that could be drawn around it, and each with several extra chairs for family or visitors. (Of course a curtain won’t save me if there’s a real chatty group right next to me, nor they from my group, if I have one.) All backed up by an extensive supply of snacks, drinks, coffee machines, a microwave, etc. And internet access, of course. Everything you could ask for in a place where you might spend hours at a stretch. Lots of staff in evidence, too. Spending 4-5 hours at a time there, if it comes to that, certainly wouldn’t be my choice. But I guess it’s about as pleasant as possible.

What makes it doubly difficult for me and, I think, many cancer patients, is knowing that some family member(s) or friend is being inconvenienced by having to be there too, or at least in the vicinity. I’m one who rarely asks for favors, doesn’t expect any, and finds it hard to accept them — and being put in such a position is difficult emotionally. I keep apologizing for inconveniencing them and thanking them for their help and they keep telling me “nonsense, it’s what family does. We want to do it.”

“No you don’t,” I think. “Just like me, you’d rather be home doing your own thing, not having to rework your entire day to accommodate my needs.” And this will continue well into the fall. Dreading it for so many reasons. On the other hand, if the roles were reversed, I don’t know how I’d feel. I’ve never been in a similar situation.

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5 thoughts on “Tests are physically and emotionally exhausting

  1. disperser Friday, June 19, 2015 / 6:19 pm MDT

    I’m one to never ask or want any help, support, hand-holding from anyone.

    It’s very selfish, I’ve come to realize.

    Especially since if the roles were reversed, as they have been, I’ve always been there for them. Never once, in any of those times, did I do it out of any obligation to family or friend. I would do it for a stranger as well, although my support, in that case, might understandably be less effective or desired (I would be suspicious of a stranger wanting to provide me with emotional support).

    The problem is that even if family and friends did want to provide physical or emotional support, they cannot. I am that self-sufficient. And that’s where my selfishness comes in. If it ever comes to it, I will thank them and tell them I appreciate it. I will do so because it fulfills whatever need they have, and it’s not my place to belittle or doubt their desire to help in whatever way they can.

    I would put forward that it’s not your place either. If they want to help, whether it actually helps you or not, let them and thank them.

    You can also let them know they don’t have to, but beyond that, it’s not your place to dissuade them unless you really, really don’t want them there. That is something that is entirely within your control, anyway; you just don’t tell them about these things until after the fact.

    • PiedType Friday, June 19, 2015 / 6:39 pm MDT

      Except I do need them. I have been and I think will be physically unable to handle most of the driving to and/or from all these doctor appointments. I certainly would drive if I could. I’d prefer it. But I couldn’t, for example, drive home after surgery. I doubt I’ll be able to drive home after a chemo treatment. I won’t be allowed to drive if drugged up for any of many possible reasons. And I have no friends or neighbors to call upon. I am totally dependent on my son and daughter-in-law if I can’t drive myself. Cabs for this many appointments would be prohibitively expensive (15-20 mile drive one way).

      I hate that I’ve gotten to the point where illness and/or age are making me dependent on others. I knew it would happen some day and I knew I wouldn’t like it. I was just hoping it wouldn’t happen quite so soon. There may be many independent years after this one very dependent one, but I’ve no way of knowing.

      • disperser Friday, June 19, 2015 / 8:03 pm MDT

        The point was, trust that they want and are glad to help. And, yes . . . future be unknown. But, that’s the same for everyone.

        • PiedType Friday, June 19, 2015 / 8:51 pm MDT

          I know. It’s just hard to suddenly be so needy.

"You don’t have to say everything to say something." ~Beth Moore

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